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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks Cort, you are right, I began the day in such a hopeful way with all this information, it is going to get better. It will get better. I just got so depressed trying to do a little cleaning as the house is so dirty and just felt too sick to try, that I got down and I think that is where the comments came from.
Lets everyone try to keep as upbeat as we can be. I used to say fake it to make it, sometimes it applies to this as well. If can imagine a day where I feel well that is half the battle. Knowing that money is coming down the pike to help us means this will become reality. It will become reality. It will become reality!:victory:
I added this to the article. PNAS does all the authors of the paper considerable latitude in getting the news out about their work to the media prior to publication.
(Megan on the Forums has noted that PNAS has a very liberal 'prepublication' policy that allows the authors of the paper to freely provide summaries of their findings to journals, etc. prior to publication. Different journals clearly take very different stances on this issue. You can check out their policies here )
All investigators should strive to inform the public about the accomplishments, methods, and motivations of science. This is best done in the popular press. The public has a right to know what we do and why we do it. We do ask that once a paper is accepted you coordinate your discussions with reporters with the National Academy of Sciences press office so that the current procedures, which allow a wide range of journalists to gain information in an equitable fashion, are honored.
XMRV has to be it. its too late for me to wait for another retrovirus to be found. i don't think they are going to be looking for another virus for a long time..they are very busy with just this one.
-S
I'm not sure that this is the case. During her interview on Virology Blog, Dr. Singh clearly implied that this could very well be the beginning of new ways to look for previously undetectable pathogens. Who knew that PCR alone would be insufficient to detect a retrovirus? Who knew that retroviruses could exist in the blood at such low copy numbers? Very little effort has been spent on finding viral infection in fluids and tissue other than the blood. All "low hanging fruit." We may be watching the beginning of a paradigm shift. As Dr. Klimas stated in December (or January?), there are a lot of bored retrovirologists out there who got into the field because a 10-20 years ago HIV was still challenging and innovative. She expects that many will jump at the chance to research and treat a new disease. Ironic that the disease that so few wanted to study (even simply acknowledge as real) just might be the key to a new way of looking for or treating our most challenging diseases.
PNAS might have allowed Dr. Mikovitz to announce the findings in exchange for publishing her findings to be annouced later in the year. PNAS might not be real happy with CDC anyway! Just a thought!
Yet more symptoms of ME/CFS.If it's 3pm today, does anyone know what time that is in the UK? Totally lost all notion of how to work the time out now that we're in British Summer Time and not GMT (I think)...Suspense... killing me...
I hope CBS can sneak into her lab and look at some slides. :victory:
I've kind of lost the plot now - have read so much about the PNAS release that it's all swirling about in my head - but is it the case that if the Alter paper is published in PNAS in this week's issue that it will go live on the website at 3pm today? I've become confused with all the talk of embargos & whatnot.
Or did I see someone say a while back that being an important paper it wouldn't be expected to appear in their online edition at all, only in the print edition and without being announced in their early thingy? But would it get announced in a press release somewhere?
If it's 3pm today, does anyone know what time that is in the UK? Totally lost all notion of how to work the time out now that we're in British Summer Time and not GMT (I think).
:Retro redface: (that is meant to indicate puzzled stress with a hopeful ending!)
Suspense... killing me...
Yet more symptoms of ME/CFS.
The Sun passes over the UK five hours ahead of the eastern US. Both have a Summer/Daylight-Saving time. (I'm still waiting to get all those saved hours back.)
I think we have the essential results now but the paper will be published in Sept. (Maybe they will speed it up now?)
I think we have the essential results now but the paper will be published in Sept. (Maybe they will speed it up now?)
Maybe it could also be the other way about. What came first, chicken or the egg? Maybe the immune abnormalities we had BEFORE the virus. Maybe they made us more susceptable to catching it?
If they can actually tell how it's doing the damage, that indicates that XMRV came first. Or if it turns out that treating XMRV restores the immune system, that will answer the question."We have immune system profiles and we can tell by the immune system how the XMRV is doing the damage, she said. So we could have a diagnostic test to follow clinical treatment and show that peoples immune systems go back to normal. Thats the latest data thats really amazing."
Its out but not for public so embargo not broken
the Alter / Lo paper is now on the PNAS website but locked down and inaccessible for public viewing at the moment.
This is the link ???????
http://www.pnas.org/content/107/33.toc